Psychosocial Issues and IBD
Having Inflammatory Bowel Disease can be stressful and hard to deal with at times. Learning about the diagnosis, taking medications every day, making decisions about treatment with your doctors in clinic, dealing with symptoms, worrying about your health and future, all while trying to live a “normal” life! Everyone responds to challenge in different ways. Some people seem to take the challenges in stride. Some people with IBD may be embarrassed by their symptoms or their need to use the bathroom frequently. They may feel like they look different (younger, thinner) than their friends and peers. They may feel uncomfortable talking to their friends and family about their disease and can feel like an outsider. Being diagnosed with a chronic illness can be depressing for some. A lot of research has shown that psychological issues like stress and sadness can be related to being diagnosed with a chronic disease like IBD. Addressing psychological and emotional issues is an important aspect of caring for children and teens with IBD. It is important to recognize these issues and address them with the IBD team. We want to take care of our children and teens as “whole people,” not just focus on the intestines.
You can live a normal life with IBD. People with IBD play sports, go to school, dance, cheerlead, sing, dance, go to college, date people, have jobs, travel, get married, have children, and participate in many, many exciting things.
Managing school obligations can be difficult when you are dealing with a chronic illness like IBD. Hospital appointments and flares may lead to missed school days. Teachers and school administrators may not fully understand the disease. We are always happy to provide a statement for school to request free bathroom access and flexibility with health care appointments. There are several other resources that may be helpful to address these concerns, as well. For example, an individualized education plan (IEP) or 504 plan can be developed with the help of your school to address many concerns. These issues should be discussed with your GI health care team. Attendance at school and participation in normal activities is important and is encouraged.
Sometimes it can be difficult to explain your disease to your friends or family members. You do not have to tell anyone about your disease, but it is helpful to have at least 1-2 people with whom you feel comfortable talking. There is no “right way” to talk to others about your disease. Tell them whatever you are comfortable telling them. Some people tell their friends that they have a “stomach problem” that makes them use the bathroom more often. Others tell their friends more details about what IBD is and how it affects them. Your friends should know that IBD is not contagious and that it is safe to play or hang out with you.
Children and teens with IBD may get down on themselves. Symptoms from the disease may cause them to lose weight, not grow tall, make frequent trips to the bathroom, feel tired, miss school, or have other troubling symptoms. Side effects of medications may make them gain weight, develop acne, feel moody, or have other troubling side effects. It is common for children and teens to feel sad, anxious, mad, or even depressed about these experiences.
Psychology and social work are active participants in our IBD team because we recognize the strong impact that IBD has on the life of our patients and families. For some of our families, this means touching base every few months during a routine office visit to see how their lives are working and being influenced by IBD. For others, it means providing education and direction on coping skills and stress management techniques. For others, it means referral for regular counseling and/or management of anxiety and/or depression. Chronic disease impacts different people in different ways. The psychological impact of IBD and its management is no less important than the medical disease management.
Here are some things to keep in mind when coping with stress:
- Be realistic about your workload. It is important not to take on too many responsibilities with school, work, and extracurricular activities.
- Exercise and follow a healthy diet.
- Get enough sleep (at least 8 hours per night) and follow a regular sleeping schedule.
- Talk to someone about your thoughts, feelings, emotions (friend, parent, sibling, teacher, therapist, health care provider, or other).
It may be tempting to utilize other coping techniques that are not as productive, like alcohol, tobacco, drugs, cutting, or social withdrawal. Our best advice is to avoid starting these behaviors and seek help if you have. All of these issues should be discussed openly and honestly with your healthcare provider. Your healthcare provider will help address these issues without posing judgment against you.
Some families seem to handle IBD challenges well. How do they do it? Here are some thoughts from research and from parents at the St. Louis Children’s Hospital IBD Center:
- balance the demands of the illness with other family needs and responsibilities
- require all children (including the child with IBD) to live up to the same expectations, follow the same family rules, share the same level of responsibility
- discipline the child with IBD when discipline is needed; this helps the child learn how to cope with life and learn from mistakes
- maintain usual family routines
- have open communication style that encourages all family members to express feelings and needs
- spend time socializing with others outside the family
- make sure all family members (including siblings) have knowledge about IBD
- use active coping strategies (such as problem solving, actively seeking social support), and minimize use of passive coping strategies (such as denial, avoidance, and withdrawal).